We LOVE hear how individual with Down syndrome have inspired their families and their communities. Today is Day 66 of 321 Days of Acceptance and we are excited to share Brandon! We have his sister Carly to share a bit about Brandon and how he has impacted her life on the #gigisblog today. You will recognize Carly from all the fabulous IEP tips she has shared with us. We are so thankful for both Brandon & Carly!
MY BROTHER. MY INSPIRATION. OUR STORY.
My younger brother Brandon is 23 years old and is part of the GiGi’s Playhouse Fox Valley. His favorite GiGi’s programs have included Teen Tastic, Fantastic Friends, and Dance. Music and dancing help Brandon come alive, showing off his dance skills in his “moonwalk”, break dancing, jumping, and other cool moves! He looks forward to the Dance at GiGi’s classes and performances, as music helps transport him to a place where he can be himself, express himself, feel a part of something, and have social interaction opportunities with other dancer participants.
Brandon has a dual diagnosis of Down Syndrome & Autism, along with other conditions which include sensory processing disorder and seizures. Music and dancing has helped Brandon overcome a lot of his challenges to help him be his “best of all”!
My brother Brandon has also inspired me to be my “best of all”, to pursue a career in special education for 8 years, and now as an IEP advocate helping families. It had been a rough road for Brandon in his later schooling. He struggled with behavior from the auras of oncoming seizures, something that was unknown at the time. I have learned it is not only important to be your child’s best advocate in the school setting, but also within the medical setting. We knew something just wasn’t right. (It is important to follow that “mommy intuition” because it is usually always right!). Once it was determined that these behaviors were indeed tied to seizures, doctors were able to find successful medication to control the seizures and low and behold, the behaviors started to greatly decrease! At first, the school had recommended a residential schooling placement. After a bit of advocating with doctors and then with the school, following many 7 hour plus meetings with the school district lawyer, I was able to get my brother Applied Behavior Analysis (ABA) behavioral therapy services both in the school and home settings. This helped Brandon learn important coping skills based on the different functions of behavior, while learning how to communicate his feelings. At the time, ABA was newly recognized by school districts as an effective intervention. Now it is one that is widely used by school districts as part of professional development for staff to implement ABA strategies within the classroom. After much advocacy work on my behalf with his school district, Brandon was able to stay in his current placement at the time by bringing the behavioral services to him, so that he could be successful in his least restrictive environment. I learned a lot about the importance of advocacy and was then inspired to do a career shift from teaching special education, to helping other parents advocate for their child’s unique needs in the special education system, via the IEP.
GiGi’s Playhouse has had a profound impact on Brandon throughout the years, as well as myself and the rest of my family. It has given Brandon a social outlet and a place to challenge himself, while providing my parents a place to chat with other families for support. This is an organization very near and dear to my heart! I have been a GiGi’s Playhouse volunteer, parent presenter, as well as a group leader for Fantastic Friends for adults with Down Syndrome & their peers of all abilities.
Seeing Brandon’s strength and determination to overcome his challenges, as well as those of other participants at GiGi’s Playhouse, has been inspirational! It has further inspired me to never give up fighting for these kids and young adults, giving them a voice to get their needs met through effective advocacy.
Thank you so much Carly for being such a powerful advocate & recourse to so many! You are Generation G
If you are inspired by Carly & Brandon perhaps you would consider joining us in raising the much needed funds to be sure GiGi’s Playhouse can continue to offer NO COST (to our participants) programing by joining, starting or support a Team for the 2017 Chicagoland 5k, 1 mile Inspirational Walk & Dash for Down Syndrome! Every dollar maters! Thank you for your help. Together we are changing the way the world views Down syndrome!